Millions Of Women With This Condition Are Being Misdiagnosed: Here’s What To Know About Vulvodynia

Imagine putting your feet up in the stirrups of your OB-GYN’s office and saying “My vulva hurts.” Now imagine your doctor peeking back over that gown and saying, “Sorry, but I just can’t figure this one out.” Welcome to the world of vulvodynia.

Defined by the National Vulvodynia Association (NVA) as “chronic vulvar pain without an identifiable cause,” vulvodynia affects some 16 percent of women. And just as the definition indicates, it’s a condition that has left doctors stumped. The NVA estimates 60 percent of sufferers will see at least three different doctors before finally being diagnosed with vulvodynia.

“I have patients who actually start crying when they hear their condition has a name,” says Nancy Phillips, MD, associate professor at the Women’s Health Institute at the Rutgers Robert Wood Johnson Medical School.

Finally, they tell Phillips, they’re not being brushed off or treated like the pain in their vulva is all in their head. Finally, they know what’s going on!

When we go to the doctor’s office and say “This hurts,” we expect answers, not a run-around that sends us seeking a second, third, or even fourth opinion. And yet doctors like Philips, who specializes in vulvodynia, say it’s common for their patients to come to them after a long series of visits with other practitioners who couldn’t help them. So what’s going on?

What is vulvodynia, anyway?

Vulvodynia is defined by the National Institutes of Health as “chronic pain (lasting at least 3 months) of the vulva that does not have a clear cause, such as an infection or cancer.”

If you don’t remember health class or that handy Orange Is the New Black anatomy refresher the vulva is pretty extensive. The term covers the outer parts of the female reproductive system, including both the labia majora and labia minora, the clitoris, and the opening of the vagina (typically called the “vestibule” to differentiate it from the rest of the vagina).

That’s a whole lot of area to cover, so doctors break out types of vulvodynia based on where someone is feeling pain.

Localized vulvodynia is felt in just one spot. For the majority of sufferers, that’s the vestibule, Phillips says, but localized vulvodynia can occur anywhere in the vulvar region. The pain just has to stay in that one spot in order to fall under this classification.

Generalized vulvodynia, on the other hand, tends to be felt all over the vulvar region. It’s less common, but no less serious for sufferers.

Once doctors determine where the pain is, next comes another set of classifications. If you’ve got vulvodynia, doctors want to figure out if it’s “provoked,” or “unprovoked.” In other words, is there something that happens that sends pain signals to the brain, or are you in pain or discomfort all the time, without a trigger?

Provoked localized vulvodynia is the most common type, says Ryan Sobel, MD, clinical assistant professor and benign vulvovaginal disease specialist in the department of obstetrics and gynecology at the Sidney Kimmel Medical College at Thomas Jefferson University. When a sufferer tries to put in a tampon, ride a horse, have sex, or even wipe after urinating, touching the area of the vulva that’s affected will trigger the feelings of pain.

And those feelings can be intense.

When provoked, the pains can be sharp, Sobel says, and they make sex impossible for most patients. Other times, patients report burning or a raw, chafing feeling in their vulvar area.

Myth Buster

Like most chronic pain conditions, vulvodynia can’t be seen by the naked eye, and there’s no blood test that doctors can run, pulling out numbers that they can point to, confirming “Yup, you’ve got vulvodynia.”

In fact, when it comes to diagnosis, the bulk of what practitioners are doing is ruling out other conditions. They’ll look for yeast, for cancer, for STDS…for all common vulva-related conditions that could cause pain in the area. They’ll test the pH levels in the vagina, check for discharge, and run through a variety of tests.

Because its definition is pain that does not have a clear cause, diagnosis of an STD, an autoimmune condition, or any other disease will generally allow doctors to rule out vulvodynia, but even there things get tricky. Some patients can have what Sobel calls co-morbidities, which means two conditions that exist together. A patient may have a yeast infection, for example, that’s gone untreated for a lengthy period of time. Once the infection is finally treated, inflammation and pain may remain, pointing to vulvodynia.

Not surprisingly, diagnosis is tricky according to Phillips, who says vulvodynia makes for a lot of confusion in the medical community.

“It is very often misdiagnosed,” Sobel adds, “because we don’t understand it well.”

In fact, many practitioners are unfamiliar with vulvodynia. Others are dismissive of patients’ complaints. Because the pain can’t be seen, the symptoms are dismissed as psychosomatic, as is the case with many other pain conditions.

Even the experts struggle to pinpoint the best course of treatment because the very definition of vulvodynia entails that the pain doesn’t have a cause, which leaves doctors debating about the best course of action.

Just make it go away.

Despite the confusion, experts in the field do have options for those suffering from vulvodynia. The condition can be treated, and the best approach depends on what is going on down there for the patient.

As part of the testing phase, doctors will look at hormonal imbalances, Phillips says. Sometimes correcting those issues with treatments—testosterone treatment, specifically—may relieve vulvodynia as the vulva responds to testosterone.

For some sufferers, neuro-modulating agents are pulled into the mix, Phillips says. Medicines such as Cymbalta or Lyrica—typically used to treat other chronic pain conditions—can work for some vulvodynia sufferers too. These medicines affect the nerves that are sending pain signals to the brain, quieting the messages so patients can go the bathroom or have sex without screaming pain.

Other patients may benefit from physical therapy, where they can learn pelvic floor exercises that will help relax tight muscles in the vulva. For some sufferers, Phillips says, muscles in the vestibule can become tight, causing pain when touched, and a combination of exercises and trigger point massage can loosen those muscles.

For vulvodynia patients who don’t see success with these less invasive treatments, Sobel says acupuncture or even surgery may be an option. A “vestibulectomy” can be done on patients with localized vulvodynia, literally removing the area where the patient feels pain. Success rates after these operations vary from 50 to 90 percent of patients experiencing noticeable reductions in pain.

Like the pain itself, success in treating vulvodynia varies from patient to patient. Some may never be pain-free, but Phillips says even a 70 percent reduction in pain can be the key to significantly improving quality of life.

Phillips says, “When it comes to a cure, you have to ask, Is a cure pain free or is it functional?” The good news for women suffering with vulvodynia? “Most people can get to functional.”